Glutey tales: Lila’s story

We all remember what it’s like to be a teenager. The stresses of trying to fit in while also trying to find your own place in the world …

If you were given a choice of timing, I don’t think many people would choose to be a teenager when they were diagnosed with coeliac disease. But you don’t really get to choose do you? Have a read of Lila’s story in part two of glutey tales …

Lila’s Story

Diagnosis:My diagnosis was unusual in that I didn’t think I was ill at the time and it was such a rare thing to test for 21 years ago. I was 14 at the time and went to my boarding school doctor for something completely unrelated. I was asymptomatic, aside from small stature and didn’t really appreciate a strange doctor telling me he thought there was something wrong with me. At 14 years old, being different was not something I wanted to encourage! But he did the tests and I got the biopsy and eventually my mum explained to me there was this stuff called gluten in wheat and I wasn’t allowed to eat it anymore.

No one I knew had ever heard of the word gluten before, let alone understand what foods it was in. I could get Bakels flour and Orgran pasta from the hospital but it didn’t cook up well and the bread was awful despite my mum’s many attempts in the breadmaker. Because of the low awareness and because I didn’t react severely I think it took me a long long time to fully understand all the places gluten was hidden. Looking back many of the things I thought were gluten free probably contained traces & contamination (like flavoured corn chips). I wasn’t aware of the importance of things like separate toasters & chopping boards.

Living in denialI spent 7 years in denial. I thought I could grow out of it and because I didn’t really react to gluten exposure (not that I was willing to admit anyway) I could kind of get away with it. As a teenager I just wanted to fit in and eat toast after school with my friends, so I did.

Because of the lack of knowledge and awareness, there was no-one really around to point out the seriousness of what I was ignoring. Strangely it was an off-hand comment from an acquaintance when I was 21 that made me stop and think about what I was doing. When I started to finally take it seriously I spent a hellish 6-months making the transition back to being gluten-free, fighting bread cravings and all-round general grumpiness.

Advice for newly diagnosed coeliacsBe gentle with yourself. It’s a lot to take in all at once. Accept that you won’t get it right all the time at the start and sometimes you’ll make mistakes. But don’t be like me and stay in denial. You have it much easier these days. It’s easy to find information and support and recipes. The paleo movement has made being gluten free more cool and trendy. It also brings with it a few myths and misconceptions and gluten-free dieters who can make it harder for those who need to be seriously gluten free but I choose to put my attention on the positives rather than negatives. Choose to be an advocate and educator rather than a complainer when somethings not quite 100% gluten-free.

Also don’t rely on processed food products labelled gluten free. Just because it says it’s gluten free doesn’t mean it’s healthy. Stick to wholefoods – did you realise there’s only about 5 wholefoods that actually contain gluten? The rest you can go to town on so learn to cook, it’s easy, just make Pinterest your new best friend and be open to trying and discovering new foods. Learn from your cooking failures and enjoy the journey anyway.

As you might be able to tell, these days I’m a big believer in focusing on the positives rather than the negatives. I’m grateful that I was diagnosed when I was, even though I didn’t appreciate it much at the time. I have no doubt that those invisible symptoms would have gotten worse given more time and stress on my body.

I don’t want to be one of those people who reminisce about the bad old days and tell you how much easier you have today because it can be a lot to take in and deal with when it happens to you whether it was last week or 20 years ago. However, there are now heaps of resources available to you so if you’re ever struggling and looking for support from people who understand all you have to do is reach out and ask for help.